After the Pivot: Things I’m Learning Since Being Diagnosed with MS

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Extraordinary days aren’t always pleasant. Especially when

what’s experienced during one of those days causes life to pivot. Suddenly.

“Todd, you have Relapsing-Remitting Multiple Sclerosis.” I’m sure my neurologist had some other important things to say after that, but truthfully, I missed ’em. My brain, the one that I was learning had lesions on it, had turned off my ears. Dr. Levy’s mouth was still moving, but my silent questions were screaming louder than his explanations.
And to be real honest, on that surreal afternoon (and more than a few days since then) I was having a hard time getting past the present, afraid of what it meant for the future.

That was all a year ago, today, and so began a crash course in learning about a condition that was not only hard for me to spell, but comprised of things I knew little about. Scarred myelin sheaths, frustrating fatigue, interrupted nerve impulses and daily pill regimens… yeah, I speak that language pretty fluently now.

I suppose the reason I’m writing about this is part catharsis, and part (I hope) educational. Writing helps me process stuff. There’s something about the journey of swirling thoughts going from my head to the computer that’s therapeutic. And, if what I’m imperfectly learning can help a person or two, I think that’s a good thing.

A few things I’m discovering…

Life is often ordinary, occasionally awful, and always beautiful.

On the Richter scale of life, most days are fairly tremor-free, arent’ they? And that’s a really good thing. I’m convinced that if every day was as great or as bad as some people’s timeline suggests, life expectancy would be drastically reduced. Either way, we simply couldn’t handle it.
So instead of feeling insecure about what our life seemingly lacks (an easy, common and wrong assumption), let’s lean into what our life actually has. Most of the time, it might not be headline stuff, but it’s a unique story worth experiencing. Live today, today.

And if today, or the past many todays,┬áincludes a storyline we’d certainly have rewritten if we’d been the author, let’s find something, anything, for which to be thankful. Family, friends, eyesight, food to eat, mobility, seasons, anything.
It’s expected and OK to dislike the awful. “Never” is everybody’s pain preference.
However, some tough stuff we can’t control. It happens. But blind suffering is a choice.
There’s still beauty. It doesn’t make the ugly disappear, but it can move it more to the background. Let’s look for it.

Life is meant to be experienced alongside people who realize, accept and help us walk through our imperfections.

Some wonderful people are helping me with this one.

  • When I was diagnosed, that evening my wife posted a handwritten scripture from the Bible on the kitchen cabinet and next to my bathroom mirror. I know not everyone reads the Bible, but for me and my family, it was a reminder that God knows where we’re at. They’re still hanging there.
  • Fatigue affects me a bit more than in the past, but my sweet running friends slow down to match my pace and chat about life.
  • My daughters let me kiss them goodnight earlier than normal if it’s been “one of those days.”
  • My extended family and church family regularly prays for two things – for my MS to go away, and if not, for my strength.

Is it possible to express the significance of all of this? Not in a million years.

Here’s the application. It’s going to take some courage and a fair amount of risk, but let’s avoid isolation. Especially in the middle of a mess. Pray for, seek out, and get around people you can trust. They’re out there. And they care. Walk with them.

The ability to stay active in life is made possible by staying active in life.

I guess this is one of the most practical things I’m discovering. When learning of my diagnosis, I remember the two things I prayed to God to be able to still do.
I wanted to be able to see and wanted to be able to run. Sounds pretty reasonable to me.

MS is a condition that, while having specific, identifiable symptoms, like temporary eye issues and mobility challenges, it affects everyone differently. What could happen is pretty well known, but when it will happen (if ever), is not. So, it’s probably not surprising to hear that I’m becoming better acquainted with uncertainty than I ever have been, or, given my idiosyncratic personality tendencies, care to be.

But I’ve determined that not being certain is OK. And saying that you’ve determined that not being certain is OK, is OK.
However, and here’s the big lesson, idling while not being certain, is not OK.
For example, you can probably tell, running is a pretty big deal to me. I don’t know when and if my ability to run will ever be compromised. But I do know what I’ll be doing in the meantime. Running.
Will I sign up for races? Yes. Will I discover more neighborhoods in Baltimore? Yes. Will I thank God for the capability to move? Yes. Will I ever regret it? No.

This is going to sound like a cliche, but here it is. The most important step in life is the next step forward. And here’s the good news. That can be done and should be done, today. Right now.
Anxiety about what we don’t know may never completely go away, but let’s make it struggle to keep up with us. Aim for something. Act on it. Adjust when necessary. And keep going.

We’re all working through stuff, aren’t we? Physically, emotionally, relationally, psychologically… it’s what people with imperfect lives do. But let’s keep fighting through it. Instead of “I” let’s choose “we”. And even if we can’t see all the way around the corner, let’s run on.

We’re going to make it.

-Todd

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